What’s it like to go through chemical menopause? – A Manager’s guide for the workplace

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What is chemical menopause? What’s it like to go through it?

Chemical menopause isn’t talked about very often and if it is it’s not undertsood.

In this blog, written by Jayne Dennis who is in chemical menopause, she shares her story so  you can understand what it is, what it’s like to go through it so you and your workplace can be better equipped to help women going through it.

Part 1: “Can you follow me please?”

My partner Ian and I follow the nurse into a room.  Non-descript art work on the walls, tiny sofa, two faux leather chairs and a coffee table wait inside for us.  None of this really registered with me as we take our seats.

A lone box of tissues sits on the coffee table.

And then I know.  I’m in ‘The Room of Bad News’.  Little did I know, what a mere 2.5 words could do.  It’s cancer.

I’m 39.

I’m 39.  It’s breast cancer (left side, which is my best side) and the f*cker has spread to my lymph nodes.  My response, “Cut off what you need to cut off, give me whatever poison you need to give me, I’m staying on this planet!”

I’m 39.  I need surgery, chemotherapy, radiation therapy.  Bang, bang, bang.  One straight after the other.  I ended up losing two breasts, all of my hair and a £20 note, which disappointingly found its way from my bag to across a car park due to sudden gust of wind.

There’s many a story I could tell you about my cancer journey, some are rather humorous, some, not so much.  That is for another time, in another blog.

Two points to remember here:

  1. My circle of family and friends were amazing during my cancer treatment. I did have to listen to numerous stories of someone’s neighbour or Great Aunt Maud who’d had cancer and was now tight roping across the grand canyon, or has just married husband #6 – I appreciated it all, and my house quickly became the envy of even the Chelsea Flower Show.
  2. My employer and work colleagues were great. Having only worked there for less than 6 months, the level of support and compassion was genuinely felt.  All the noise from HR sickness policies, absent management processes and procedures on everything pay related were silenced.

    For both the above, I will always be grateful.

    Ok, mushy stuff over with.  I digress.Back to it.

    Unexpected Plot Twist

    The aggressive cancer treatment is over. I’m 40, I have a new set of boobs, ones which don’t show to everyone within a 3 mile radius, that the temperature is a bit ‘nippy’.  I’ve had the all clear – Cancer has left the building.

    Now when someone gets the all clear, it’s incredible news – and everything can return to how it was before the Big C turned up.  It’s the part where the oversized story book of a classic Disney film closes, and the words ‘THE END’ signal it’s finally time for that overdue loo break.

    Or so I thought…

    “Can you follow me please?”

    I follow the nurse into a room.  Non-descript art work on the walls, tiny sofa, two faux leather chairs and a coffee table wait inside for us.  None of this really…

    WHOA! PLOT TWIST

    A lone box of tissues still sits on the coffee table.

    I’m in ‘The Room of Bad News’.

    AGAIN.  What The…????

    It’s not Cancer.  I’m not giving my new boobs back, so why am I back in ‘The Room of Bad News’?

    New Action Plan

    I leave ‘said’ room armed with a letter for my GP and a prescription.

    ‘Patient to take one tablet, per day, for the next 10 years.  Patient to have syringe administered implant to stomach area, every 4 weeks, for the next 10 years.’

    No, it’s not a typo – the next 10 years.

    Take the 10 years out of the equation. You’d be forgiven for thinking, is that it?  Many thought the same, I know I did – and not least of all, so did my employer.

    You see, when the cancer was removed, a number of further tests were done. 

    The results were in and the headline on the letter read: Cancer Hormone Responsive: Result – Positive.

    This meant the cancer was more likely to return than if the result was negative. 

    The duo of medication hopefully made this less likely, a long-term preventative measure with some promising success rates.  There may be slight side effects, which medication doesn’t these days? 

    There will be ongoing reviews to attend at hospital, this was expected and welcomed.

    I picked the first prescription of tablets up, one month’s supply, and six weeks later I’d have the first implant injection.

    I’m OK, I’m going to be OK. 

    I’m really going to be OK. 

    Cancer is gone, and it can stay gone. 

    NHS 1 – Cancer 0. 

    Result. 

    The door can finally be closed on this chapter. 

    Up Yours Cancer!

    I sounded upbeat, didn’t I?  From the outside looking in, it certainly seemed true enough.  I was still on the planet.  My hair was growing back – even if it did resemble (and feel like) new-born chick fuzz.

    What did I have to complain about?

    Let the Chemical Induced Menopause commence…

    Part 2: The Chemical Menopause Roller-Coaster

    Before I let you into the whole chemical menopause roller-coaster which is my life now, it is important to understand where I was mentally, emotionally and physically (in terms of my body, not my GPS location) following my cancer treatment, and before starting preventative treatment.

    I stress again – this is my own experience, I am sharing only the thoughts I had about myself and my experiences.

    Remember these from before?

    Two points to remember here:

    1. My circle of family and friends were amazing during my cancer treatment. I did have to listen to numerous stories of someone’s neighbour or Great Aunt Maud who’d had cancer and was now tight roping across the grand canyon, or has just married husband #6 – I appreciated it all, and my house quickly became the envy of even the Chelsea Flower Show.
    2. My employer and work colleagues were great. Having only worked there for less than 6 months, the level of support and compassion was genuinely felt.  All the noise from HR sickness policies, absent management processes and procedures on everything pay related were silenced.

    Getting the all clear changed these dramatically – Employers, pay attention here for when you have any of your workforce undergoing cancer treatment.

    I have the all clear.  I survived.  I kicked cancer’s arse.  I’m an official cancer survivor.

    The circle of family and friends who were so supportive, and who had emerged from the woodwork to send positive well-wishes (enough to keep the greeting card companies in material for the next 2 years) disappeared over night.  The texts, the emails, the home visits – they all stopped.

    My employer was overjoyed to have me back.  I was back, doing my job, less hair; yes, I was still back never the less.  Back to business as usual.

    I get this, I really do.  From an outsider looking in, it was all over.  No more treatment, no more surgery, no more of anything.  I survived, wasn’t that great? Nothing to see here – so move on.  Life is super busy, and everyone went back to theirs.  Everything could go back to normal.  Couldn’t it?

    No one tells you how hard it can be surviving cancer.  No one talks about how hard it can be surviving cancer.  Takes the shine off the helium balloons.  Tarnishes the metallic foil writing on the cards.

    Makes you sound like an ungrateful bitch if you complain…

    Behind The Scenes

    The bit people didn’t see was – (apart from my husband and daughter) – I felt so alone, dropped as quickly as I’d been picked up.

    The rekindled friendships I’d come to appreciate went back to being the occasional Facebook post.  People went back to their own lives, their own jobs and taking photos of what they were eating for tea that night.

    This is life, this is the reality – being on the receiving end of so many doors closing is hard.

    Work was a little different, you see people there every day.  I was around my peers, my team, my management, my desk.  What changed was the conversation – my cancer was ‘so yesterday’, can we change the subject please?  The feeling that I might be ‘milking’ situation if I even sneezed didn’t leave me – being the one to have to close so many doors, to keep things to myself, was hard.

    Hospital appointments stopped, weekly check-ups with my nurse stopped, being around others in the same boat as me stopped (or sailed away), seeing my doctor/surgeon stopped, text messages stopped, phone calls stopped, everything stopped.  Everything went back to being normal.  Wasn’t it?

    I had no hair.  I had no breasts.  I had no nipples!

    Under my clothes, I looked like the Bride of Frankenstein, or as I am more inclined to think, something out of a Tim Burton film (I LOVE Tim Burton, so I’m happier with this comparison).  I have lost all sensation down the left side of my upper body, across the front, and all across the back.  I feel like I am eternally wearing a corset which is too tight and one which I cannot escape from.  Nerve damage from the 8 surgeries is like fire under the skin.

    I feel alone, ugly, rejected, isolated.

    And NOW?

    No-One Mentioned Menopause

    I was clueless about what was about to happen to me – absolutely clueless.  I knew what the medication was for, to reduce the chances of cancer coming back.  I knew it had to do with my hormones.  Not once was the ‘M’ word mentioned.

    So there I was, taking my one tablet each day, ignorant to the changes going on in my body.  Anything a little untoward I put down to the after effects of chemo and radiation.  Tiredness/fatigue, I was used too by now, feeling queasy I took in my stride.  I was in a constant spectrum of pain from some part of my body or another.

    Unexpected Symptoms

    Then, after about a week of beginning the tablets, I spontaneously combusted.  I went from warm, to a temperature on par with the surface of the sun, quicker than it took me to say “WTF?”.

    What was happening?  What was wrong with me? How long will it take before I’m nothing but a pile of ash?

    Is this what the inhabitants of Pompeii felt when Vesuvius engulfed them?  No, wait.  Is this how Vesuvius felt when it erupted?  Tad too scientific?  Is this how vampires feel when the blinds open and the sun streams in?

    I’m only stirring a cuppa, not bathing in it.

    It lasted for over 2 hours.  The inner-nuclear reaction, not the cuppa.

    The first of many hot flushes; lasting hours.  Hours during the day, and nearly most of the night.  Nothing cooled them.  Anything within a 30cm radius was soaked, clothes, bed linen, my husband.  Make-up melted off my face like it was Teflon,ending up round my neck like some weird, distorted wet-looking face scarf – great idea for Halloween parties.

    Dizziness and sickness came next, disorientating, distracting and, when coupled up with the extreme heat of my new internal furnace, debilitating.

    Fatigue like I had never experienced, hit me like a freight train, more extreme than anything I’d felt during cancer treatment.  My whole skeleton felt that the forces of gravity had multiplied 10 fold.

    What was happening to me? – this is more than ‘slight side effects’.

    Answers from Unexpected Sources

    The first glimmer of an answer came, not from my doctor, but from the trainee cashier at my local pharmacist, whilst I was picking up month two’s supply of the dreaded daily tablet.

    “These are meant to be awful.  My mam’s friend is constantly talking about how her menopause symptoms are so much worse than my mam’s because it’s a medical menopause.  My mam says it’s all in her head though.’

    Medical Menopause – was there such a thing? A seed had been planted,better make an appointment with Dr Google.

    The second glimmer of an answer came from the nurse who was about to give me my first implant injection.  Remember, I was on daily tablets, and monthly implant injections.  Injection is an understatement – the harpoon like, spring loaded instrument with a knitting needle attached, was not like any injection I’d ever seen.This instrument of torture was about to puncture my stomach, so the spring loaded plunger could fire the implant under the skin at a force 3 times quicker than the speed of light – and this was to happen every 4 weeks?!?

    Once that delightful procedure was over, and my next appointment was being made, the nurse asked if I had been told much about the side effects.

    No, not at all.  Not in any shape or form, nothing, nada, zilch, zero.

    Here is a summary of what I found out:

    • My cancer was ‘hormone receptive’ – receptive to Oestrogen to be specific which meant my female system needs to be ‘shut-down’. This meant my Ovaries.

    The solution? I was being put into a chemically induced Menopause, or The Chemical Menopause; not to be confused with Medical or Surgical Menopause, this is when they take out the offending body parts!

    • There won’t be the ‘typical’ Peri-Menopause for me

    This meant it would be an instant ‘state’ of Menopause for me

    I’d experience symptoms of Natural Menopause – only 20 times more intense

    My symptoms do not ease off, or lessen – they remain for the duration, as long as the medication lasts. 10 years in my case.

    • My symptoms cannot be treated with HRT – this would replace the hormone the medication is ‘shutting down’, and provide ‘food’ for future cancers
    • I have to be on this treatment if I want to increase my chances of staying on this planet for longer

    I left, hobbling after my close encounter with the harpoon, and knowing I needed a much more detailed conversation with Dr Google…

    After losing hours of my life I’d never get back, and exposing myself to the stuff of nightmares, I felt no further forward.  If I’m brutally honest, I felt utterly powerless.

    And I still do…

    What’s happening now?

    After 4 years, I have still not found a place to be accepted.  I have still not found a place where I feel seen, feel heard, feel understood.  Yes, I get the ‘poor you’, the ‘pity eyed look’ from others – my close inner circle (which is now tiny by the way) included.

    • Do I sound ungrateful that I survived cancer?
    • Should I ‘suck it up’, put my big-girl pants on and get on with it? 
    • Who do I talk too? 
    • Who would understand?

    I wish it was that easy, to armour up, put the mask on, and look amazing, really I do.

    The Honest Truth

    You want to know the absolute, honest truth about all my armour? 

    It’s all for you. 

    It’s all for show. 

    It’s all for hiding what’s happening to me. 

    It’s all for my protection. 

    It’s all for everyone else. 

    It’s all about hiding my embarrassment, my isolation, myself.

    Here’s why;

    • Hot flushes, insanely hot flashes, fire up instantly, no warning –I’m drenched almost immediately. My face, my hair, my clothes.  I feel like the character from Roal Dahl’s Charlie and the Chocolate factory – the one who turns into a blueberry – though I’m a deep shade of scarlet – my whole body is swelling up.  And I don’t have an Oompah Loompah to roll me to the nearest exit.
    • Words disappear mid-sentence. I mean they just vanish, poof! Like they never existed.  Now I’m not talking memory loss here.  I’m a talker, always have been.  Words have never alluded me until now.  Words play a sinister game of hide and seek, more hide and no seek.
    • Pain. Redhot pain. My joints, my whole skeleton can feel on fire.  The effort and energy to move sometimes can be overwhelming, and the toll it takes on my stamina has been debilitating at times.  Instead of 44, I look and feel like I’m moving around like I’m nearer 94.
    • Fatigue. I’m not talking about tiredness.  I’m not talking about not having enough sleep.  This is fatigue on a level I have never experienced before.  When fatigue hit me, it’s sudden and extremely unwelcome.  My vision starts to go, my eyes shiver in an effort to stay open.  The energy and focus just to stay awake drowns out my outside world.  I can’t pay attention to anything.  I even experience the ‘dropping off a cliff’ you have when you fall asleep –only I’m awake and unnerve those around me when my whole body jerks forward.  I sometimes wish I was falling off a cliff – the embarrassment is painful.
    • Nausea. Let’s add feeling sick to my stomach all the time too – just for fun.  I turn an attractive shade of grey, which no amount of make up seems to be able to hide.  That’s if any make up stays put long enough before it melts off my face anyway.
    • Food avoidance. I can’t take HRT, so I’ve had to painfully learn that some foods increase my already super intense symptoms to astronomic heights.  Refined sugar – one Haribo can see me go from hot flash to nuclear flash in T minus 5 seconds.  And this is only one of a huge number I give as an example.  Drinks are the same, high sugar, high caffeine, high anything.  So no, I am not being awkward or difficult when I ask for the herbal tea option, or say that water is ok.

    There are more ailments can write about, I won’t though.  So put those tiny violins away, sympathy is not why I wrote this article.

    My Reason For Writing This

    So why am I writing this?

    To raise awareness of how the Chemical Menopause ‘shows up’ on the inside and outside.

    There are two sides of the mirror, and it is important to know this.  There is a battle raging on the inside, and this alters what you see on the outside.

    And what you see on the outside, creates your perception, makes a base for your assumptions, plays to your judgements – all of which could be a complete misinterpretation of what is actually going on.  This is not the finger of critique, or blame.

    So please lower those defensive reactions and begin to raise your awareness on this.

    You, and your workplace, can make all of the difference to an individual going through chemical menopause, going through any menopause in fact.

    The chemical menopause is different, and is not talked about.  I’m here to start this conversation, and to give insight from my experiences to help.

    So what can I give you?

    How about this:

    • I’m alone.I’m suffering in isolation, I’m drowning in all this. How are you set up to help me?
    • I’m vulnerable. I feel exposed and scared of what this could mean in terms of my performance?  How are you set up to help me?
    • I’m visible. I’m painfully aware of what people might be thinking.  I’m painfully aware of my clothes, that they are different, less ‘formal’.  My feet swell to the point that even my ankles have grown saddlebags to hang over my shoes.  How are you set up to help me?
    • I’m lost. There is so little on Chemical Menopause, I don’t even understand it, and I’m going through it.  It is not a ‘made-up’ excuse to exploit you or HR.  It Is REAL, and it is TERRIFYING and LIFE CHANGING.  How are you set up to help me?
    • I’m a person. There is no process you have in which you can pop me onto the conveyer belt and action me like a transaction.  Process driven, transactional approaches are outdated and unhelpful.  Being chewed up by process first, people last machine engines is a terrifying prospect.  And the automated, generic and robotic letters I receive informing me that I have to attend a ‘Return To Work’ interview are potentially traumatising.  How are you set up to help me?
    • I’m suffering. The chemical menopause is the gift which keeps giving.  The intensity and speed at which these gifts descend on me and take hold is mind blowing, and mortifying.  I can feel the fluid being pushed out of my skin, I can feel my clothes dampening, my skin changing colour, my wedding ring getting tighter as my hands inflate.  I’m also in a meeting with other people, or I’m at my desk speaking to you and the team.  How are you set up to help me?
    • I’m trying MY best. I may seem tired, I may seem slow, I may look like I’m not performing, I may look a lot of things – your perception of this could also be a lot of things.  How are you set up to help me?
    • I’m not a stereotype. Menopause has a label, which is unhelpful in itself. There are no stereotypes for any menopause.  Incredible work is being done now to raise awareness and demolish the unhelpful labels out there.  I’m not in natural menopause, I’m not in surgical menopause – I’m in a chemical menopause, with side-effects at a higher intensity.  They won’t ‘just’ go away.  They are here to stay for as long as I’m on my medication – which for me is 10 years.  How are you set up to help me?

    I’m Jayne, I’m 44 and I’m in a chemical menopause.  How are you set up to help me?

    About the writer

    Article by Jayne Dennis – caveat:  This article is my personal story, it includes my personal thoughts, feelings, perceptions and experiences.  It is not reflective of, or a commentary on, any one other than myself.  This is my story, this is my truth.

    Jayne Dennis is a Consultant and Coach specialising in Leadership Development, Emerging Talent, Team Effectiveness, Cultural Transformation and Change 
    Her contact details are email jayne@pinpointonline.co.uk and you can connect with her on LinkedIn 

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